Authors: Toni Bernhard,Sylvia Boorstein
How to Be Sick (20 page)
Then one day in 2005, I was listening to an audiobook,
The Dive From Clausen’s Pier,
by Ann Packer. At one point, a character said, “Lonely is a funny thing. It’s almost like another person. After a while it will keep you company if you let it.” And, just like that, in three short sentences, my heart and mind opened to being alone. From that day on, I’ve been better able to welcome isolation as a friend, and the pain of loneliness has been replaced with the good company of solitude.
The Dive From Clausen’s Pier,
by Ann Packer. At one point, a character said, “Lonely is a funny thing. It’s almost like another person. After a while it will keep you company if you let it.” And, just like that, in three short sentences, my heart and mind opened to being alone. From that day on, I’ve been better able to welcome isolation as a friend, and the pain of loneliness has been replaced with the good company of solitude.
Of course, I’m not always successful. Some days, I rejoice in the glory of solitude. Other days I feel so lonely it brings me to tears. Some days, I’m content to let the small town life of Davis unfold without knowing, as I used to, all the details of what’s going on socially and politically. Other days, I’m hungry for news from outside the house. Tony is well aware of this latter tendency. Recently, he ran into a woman who did yard work for us many years ago when she was an undergraduate. We knew she’d been through a painful divorce and had been having a difficult time for a few years. To Tony’s delight, she told him that she’d met a man and was happily in love. Tony told me that he said to her, “Okay, ask yourself everything that Toni would want to know about him and then tell me, so that I can tell her.”
When overcome with loneliness, I use the practices I’ve described in this book, starting with the first noble truth of dukkha
.
I recognize that all living beings face suffering. Even those who aren’t sick may experience the pain of loneliness. I think of Joko Beck’s teaching: This is just my life; there’s nothing wrong with it even if I’m lonely at the moment. Then I might move to weather practice, reminding myself that the mental state of loneliness, like everything, is impermanent. It blew in and will blow away, perhaps replaced with the serenity of solitude. Cultivating the sublime states soothes me during these blue periods. Byron Katie’s inquiry gives me the tools to examine the validity of stressful thoughts that often accompany the feeling of loneliness, thoughts such as: “Nobody cares about me”; “I’ll always be lonely.” These Buddhist and Buddhist-inspired practices are always waiting in the wings to help transform that neutral fact of isolation from the despair of loneliness to the serenity of solitude.
.
I recognize that all living beings face suffering. Even those who aren’t sick may experience the pain of loneliness. I think of Joko Beck’s teaching: This is just my life; there’s nothing wrong with it even if I’m lonely at the moment. Then I might move to weather practice, reminding myself that the mental state of loneliness, like everything, is impermanent. It blew in and will blow away, perhaps replaced with the serenity of solitude. Cultivating the sublime states soothes me during these blue periods. Byron Katie’s inquiry gives me the tools to examine the validity of stressful thoughts that often accompany the feeling of loneliness, thoughts such as: “Nobody cares about me”; “I’ll always be lonely.” These Buddhist and Buddhist-inspired practices are always waiting in the wings to help transform that neutral fact of isolation from the despair of loneliness to the serenity of solitude.
When I told Tony I was writing about sangha
,
he said that he defines it not just as a person’s spiritual community, but as the culture of awakening. I love that view of sangha because it expands it to include resources that are beyond the face-to-face contacts that may have become impossible for the chronically ill to maintain. The culture of awakening includes websites maintained by spiritual communities, talks on CDs, blogs. Just enter “Buddhism” or any religion or other spiritual tradition into Google and you’ll be awash in resources that can help substitute for a traditional sangha
.
,
he said that he defines it not just as a person’s spiritual community, but as the culture of awakening. I love that view of sangha because it expands it to include resources that are beyond the face-to-face contacts that may have become impossible for the chronically ill to maintain. The culture of awakening includes websites maintained by spiritual communities, talks on CDs, blogs. Just enter “Buddhism” or any religion or other spiritual tradition into Google and you’ll be awash in resources that can help substitute for a traditional sangha
.
For the chronically ill, another culture can be added to this expanded view of sangha
.
When I became sick, I felt as if I’d left the culture of awakening and entered the “culture of the sick.” (On NPR, essayist Richard Rodriguez talked about entering this “other America” when he was diagnosed with cancer.) When I log on to the Internet to connect with people, I find myself drifting, not to Buddhist websites, but to blogs where people are similarly sick. I’ve encountered bloggers who range in age from a sixteen-year-old girl with chronic fatigue syndrome who can rarely leave the house, to a mom with multiple sclerosis who is struggling to raise two girls, to a man in his sixties with diabetes who writes a daily blog from his bed.
.
When I became sick, I felt as if I’d left the culture of awakening and entered the “culture of the sick.” (On NPR, essayist Richard Rodriguez talked about entering this “other America” when he was diagnosed with cancer.) When I log on to the Internet to connect with people, I find myself drifting, not to Buddhist websites, but to blogs where people are similarly sick. I’ve encountered bloggers who range in age from a sixteen-year-old girl with chronic fatigue syndrome who can rarely leave the house, to a mom with multiple sclerosis who is struggling to raise two girls, to a man in his sixties with diabetes who writes a daily blog from his bed.
These people don’t use the term
dukkha
(the teenager is a devoted Mormon for instance), but they are writing about suffering. For me, sangha now includes these chronically ill people who have come face to face with the fact of suffering in their lives and who, like me, are struggling to accept it and to cultivate compassion for their own illness and for those they encounter on the Internet. The fact that they don’t share Buddhism per se with me doesn’t matter—they’re part of my sangha
.
dukkha
(the teenager is a devoted Mormon for instance), but they are writing about suffering. For me, sangha now includes these chronically ill people who have come face to face with the fact of suffering in their lives and who, like me, are struggling to accept it and to cultivate compassion for their own illness and for those they encounter on the Internet. The fact that they don’t share Buddhism per se with me doesn’t matter—they’re part of my sangha
.
It’s a limited sangha for me because, many days, the computer time I can handle limits me to reading and answering an email or two and checking a few blogs or news sites. But many of the chronically ill aren’t as limited. Whatever your illness, it’s easy to find support groups and blogs peopled by those facing the same difficulties as you. I know from reading the comments left on the blogs I do follow that these online contacts can be a lifeline. One woman wrote that she was overwhelmed by loneliness until she found blogs written by people who were similarly sick because for the first time since becoming ill, she was able to connect with people who understood her.
The word I used in the title of this chapter, struggle, describes well my experience in adjusting to the loss of my spiritual community, to the loss of so many friends, and lastly, to being alone much of the time. I’ve largely come through that struggle, but it took time, it took effort, and it took help from a lot of people—the Buddha, his followers, a philosopher, a fiction writer, and ordinary people who have been generous enough to go online and share their experiences as members of the “culture of the sick.”
18
And in the End . . .
This very place is the Lotus Land;
This very body, the Buddha.
—HAKUIN
LIVING WELL WITH CHRONIC ILLNESS is a work in progress for me. Some days, I still cry out:
“I can’t stand this oppressive, sickly fatigue one more day!”
“I don’t care if stressful thoughts exacerbate my physical symptoms!”
“I don’t want to hear that laughter coming from the living room!”
“I don’t care if this is the Way Things Are: I don’t want to be sick!”
When this happens, I “put my head in the lap of the Buddha,” as the Dalai Lama suggests, and again take refuge in one of the practices I’ve shared in this book. The Buddha’s teachings and the practices he inspired are always waiting in the wings to see me through. The Buddha continues to inspire me because he never claimed to be anything more than a human being. In fact, the Buddha found pain just as painful as you and I do, as the Buddhist texts take great care to make clear. Consider this passage about an instance when the Buddha was cut by a stone splinter:
Severe pains assailed him—bodily feelings that were painful, wracking, sharp, piercing, harrowing, disagreeable. But the Buddha endured them, mindful and clearly comprehending, without becoming distressed.
I take this as a reminder that the equanimity and joy we see in the many images of him is within the reach of every one of us. I never stray far from the first noble truth—the fact of dukkha in our lives. I think here too of Joko Beck’s teaching that our life is always all right. There’s nothing wrong with it even if we have terrible problems. It’s just our life.
In the Buddha’s time, his monks would carry a bowl with them as they went into the village to collect food from lay supporters. Each day, a monk ate only what was put in the bowl, whether it was filled to the top with scrumptious goodies or contained only a few morsels. Tony uses this as a metaphor for life. We have what is put in our bowl. Tony’s and my bowls contain my illness. At times, this has been a great source of suffering for us. But even people whose bowls are usually filled with ambrosia have days when they are only given a few grains of rice. And although Tony’s and my bowls contain my illness, our children and grandchildren are in there too, along with other blessings. This is what we’ve been given.
In October 2009, I was listening to Terry Gross’
Fresh Air
on NPR. She was interviewing country music singer and songwriter Rosanne Cash. Cash had been forced to put her career on hold for several years because she had to have brain surgery for a rare but benign condition. Terry Gross asked her if she ever found herself asking “Why me?”
Fresh Air
on NPR. She was interviewing country music singer and songwriter Rosanne Cash. Cash had been forced to put her career on hold for several years because she had to have brain surgery for a rare but benign condition. Terry Gross asked her if she ever found herself asking “Why me?”
Cash said “No,” that, in fact, she found herself saying “Why
not
me?” since she had health insurance, no 9-to-5 job that she might lose during her long recuperation, and a spouse who was a wonderful caregiver.
not
me?” since she had health insurance, no 9-to-5 job that she might lose during her long recuperation, and a spouse who was a wonderful caregiver.
Rosanne Cash’s words had a profound effect on me. Now, on a day when I start to sink into that “Why me?” mood, I turn it into “Why
not
me?” I, too, have health insurance. I, too, did not suffer financially when I had to stop working, other than having to tighten our budget. I, too, have the best of caregivers. So why
not
me?
not
me?” I, too, have health insurance. I, too, did not suffer financially when I had to stop working, other than having to tighten our budget. I, too, have the best of caregivers. So why
not
me?
I have a Facebook page that I originally created so I could play Scrabble with my family. But gradually I’ve accumulated “Facebook friends,” some of whom I don’t know personally because they’re friends of my children. In 2009, Davis was the starting point for Lance Armstrong’s first race in the U.S. after coming out of retirement. In a town as small as ours, this was a major community event. Our local newspaper expected big crowds to gather downtown for the noontime start of the race despite it being a rainy day. People would be there whom I haven’t seen for years. Feeling frustrated, cranky, and lonely because I couldn’t be part of this social gathering, but also not wanting to whine online, I posted on my Facebook page “Lying in bed, watching the rain.” My daughter’s friend, Stephanie, who doesn’t think of me as sick because we’ve never met, added this lovely comment to my post: “That sounds
perfect
!”
perfect
!”
I momentarily thought, “Yeah, perfect for
you
,” but then I smiled, realizing that my life is indeed perfect. There’s nothing wrong with it. It’s what I’ve been given. It’s just my life.
you
,” but then I smiled, realizing that my life is indeed perfect. There’s nothing wrong with it. It’s what I’ve been given. It’s just my life.
In sickness or in health, my heartfelt wish is that you be peaceful, have ease of well-being, reach the end of suffering, and be free.
A Guide to Using the Practices to Help with Specific Challenges
SOME PRACTICES IN THE BOOK may resonate with readers, others may not. I encourage you to try them all and stick with the ones you find helpful.
Suffering due to the relentlessness of physical symptoms or from the addition of new medical problems
▶
Take solace in the fact that you are not alone
; suffering is present in the lives of all beings. Having been born, we are subject to change, disease, and ultimately, death. It happens differently for each person. This is one of the ways it’s happening to you. Recall Joko Beck’s teaching: your life is always all right; there’s nothing wrong with it, even if you’re suffering. It’s just your life. The good news from the Buddha is that no matter how much you are suffering physically, there are practices that can help alleviate your mental suffering. (See chapter 3)
▶
Breathe in the suffering of all those who share the symptoms you’re experiencing
. Breathe out whatever kindness, serenity, compassion you have to give. Because you share this particular kind of suffering with them, the thoughts you breathe out will also be directed at yourself. (See chapter 11)
▶
Repeat the loving-kindness phrases you’ve settled on
, directing them at yourself, perhaps stroking your body as you do so. (See chapter 7)
▶
Open your heart to your suffering.
Find words that are specific to the particular difficulty you’re experiencing, and repeat them compassionately to yourself: “It’s so hard to wake up with a headache every morning”; “It feels overwhelming to have this injury on top of my illness.” Recall Thich Nhat Hanh’s description of one hand naturally reaching out to the other in pain. Cultivate patient endurance by trying to maintain a calm state of mind while also not giving up on your search for relief from your symptoms. (See chapter 8)
▶ As you experience the unpleasant physical sensations, instead of reacting with aversion,
consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity
—directing the sublime state at yourself. You can also try moving your mind to
mudita
, taking joy in the joy of those who are in good health. (See chapter 10)
▶
Try Weather Practice
. Recognize that these physical symptoms are as unpredictable as the weather and could change at any moment. The wind blew the discomfort in and it may blow it out any moment. If a new medical problem develops (like an injury), recall that no forecast of the future could have been certain no matter how many precautions you took. (See chapter 4)
▶
Try to keep Don’t-Know Mind
, reminding yourself that you don’t know how long any particular discomfort will last. It won’t last indefinitely, and you might even feel better soon. Recall the Zen practice of shocking the mind and how the power of pain could provide such focused attention that the mind is shocked into a moment of awakening. Turn to the poetry of Zen to soothe the body and to feed it the medicine of laughter. (See chapter 15)
▶
Use Byron Katie’s inquiry to question the validity of stressful thoughts
such as “This physical discomfort will never go away” or “I can’t stand this symptom one more minute.” (See chapter 12)
▶ When a thought persists about the past or future regarding the relentlessness of symptoms (“I caused them because of what I did yesterday. . .Will they ever subside?”),
acknowledge the thought and then . . . just drop it
, bringing awareness to the present moment. Try Byron Katie’s practice of stating what you’re doing physically
right now
: “Woman lying on bed, resting.” This will take you out of your repeating round of stressful thoughts and into the present moment. (See chapter 13)
▶
Be sure you don’t engage in Unwise Action
—actions that could exacerbate symptoms (such as doing too much housework). (See chapter 14)
▶ Recall Munindra-ji’s words and recite, “
There is sickness here, but I am not sick.
” Contemplate “Who Am I?” to help shed the fixed identity of “sick person.” Try sky-gazing. If you’re in bed, try virtual sky-gazing by closing your eyes and shifting your focus from the unpleasant physical symptoms to a more spacious and open experience of body and mind as part of the energy flow of the universe. (See chapter 5)
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